I write as an outlet, as two of our children battle cancer, positive for Li-Fraumeni Syndrome. I cannot say how often I have heard the phrase, "I cannot even imagine..." but hope to give a glimpse of what this is like...and to reassure you that it is not all bad, despite the challenges.

Monday, April 15, 2013

Terror

Today was an average day, meeting with doctors and planning for tomorrows hospital visit for Brent...stepping into the pet store to pick up some replacement fish for Lauren's tank. But when he got home, Dan turned on the news to the awful events in Boston. I was reminded of something I wrote a while ago, but didn't know what to do with it. It seems like today is a fitting time to share ...I suppose my analogy will extend to Bostonians now as well in this world gone mad. Prayers for them all, on this Patriot Day.

How is Brent feeling today?Awful?Terrible? Horrible?2/25/13

At turns, I am struck with the elasticity of our language
and annoyed with its imprecision.In an
effort to explain what this journey is like, I am forced to use words.But the words I am forced to use, at times,
seem inadequate, watered down, or somehow, altogether inappropriate. ‘Terrible’
is a word that I have used to describe how Brent feels when he needs a
transfusion.But it really isn’t a good
word, and I try to reserve it for times that properly reflect its meaning.

After we first discovered Brent’s tumor and while we waited
for the doctors to develop a plan, now, that was a terrible week.I do not mean ‘turrible,’ the way Charles
Barkley says it when Kobe Bryant throws up a brick.“That is just turrible, really turrible!”

I mean it in the fullest, most original sense, like Marie Antoinette
and the French Revolution; they-are-coming -for-my-family-with-pitchforks-and-there-is-no-stopping-them-
kind of way.I knew immediately that
day, that Brent had an uphill battle and the Ramers had a big genetic problem.I
absolutely felt to the marrow of my bones that cancer was coming for my whole family
like a mob of peasants armed with pitchforks and sickles. And furthermore, there was nothing that I
could do or say that would stop it.The
despair and the fear and the helplessness that I felt was completely primal. It was utterly terrifying.

That sense of terror, well, we are blessed in this country
to not have a common experience that really captures this feeling, except perhaps
for those who live in NYC. (Maybe this would explain my kindred feelings toward
New Yorkers)They no doubt understand,
having lived through the 9/11 attacks.That must have been truly terrible-- a terror-filled experience.

‘Terrorism’ in the American heartland was not felt in the
same way.I am not in any way saying
that we were not afraid on that day, nor that we failed to care about or
understand the impact of the events happening in New York, Washington and
Pennsylvania.But by virtue of not having
seen it up close, of fearing for our own immediate safety and that of our loved
ones, of smelling the fires, of walking amongst the wreckage and living with
the scars, literally and figuratively, well, we might imagine, but not truly know
the terror.It was witnessed on
television, but not experienced.I
believe that there is a difference.

I wept on 9/11 as I watched.It was horrifying to watch. And I was very fearful.But it was not terror.

And at this point in time, 11 years later, ‘terrorism’ has
become a political buzzword that is thrown around fairly carelessly, in my
humble opinion, splattered over campaign ads and sprinkled into sound bites.The word, so overused, no longer captures the
fear and helplessness that was felt that day…the sudden mistrust of our own population
because ‘they’ were hidden among us… crazy enough to fly planes into buildings,
and so eager to kill us all, that they cared not a whit about their own welfare.
(The analogies with cancer here are
rife)

I am not critical of our arrival to this point as a nation, simply
making the distinction. No one can live in a state of constant terror.Our bodies cannot long withstand the
onslaught of adrenaline, and as a society we naturally have become inured to
the notion of danger from within.We are
watchful, wary and try to be prepared.But we have to go on.

I suppose that I am no different, because I am not feeling
like Marie Antoinette these days, despite the continued threat.The danger is still here, but we have no hope
of running back to the safety of Austria, understanding that we carry the
threat with us, actually inside of us.(Marie
almost made it with her family, fleeing for the border)The flight or fight response was in full play
for us back then, during our ‘time of terror’ that awful, terrible fall when I
was so full of fear.

But we Ramers are now standing our ground, ready for a
fight, vigilant and watchful, with pitchforks of our own, torches lighting up
the dark places.We have become the
hunter, rather than the hunted, but are desperately hoping never to find
anything.Ever.

And in the meantime, I am afforded the luxury of being
perplexed about how to best express how Brent feels.

About Me

Our pediatric cancer adventure was complicated by the discovery of a genetic mutation (Li-Fraumeni Syndrome) which predisposes two of my children to all forms of cancer. While Brent, now 16, battled osteosarcoma (bone cancer), we found that Lauren, now 13, had a rare brain tumor. Since our initial problems in 2011, Brent developed two subsequent cancers (Metastatic melanoma and AML--a leukemia that required bone marrow transplant) and Lauren had a second brain tumor removed.

I share both the challenges and the blessings of this life, pretty freely.